Tag Archives: spoon theory

This Blogging Against Disablism Day, I find myself reflecting on a refreshingly honest question I received from a student several years ago: “What do you think is the most difficult thing about being blind?”
“Everything,” I quipped, only half-joking.

To the average non-disabled person, living with a disability can often seem like trudging daily up a steep, endless hill that you can never reach the crest of. On most days, I cope as well as anyone, but on some days, I simply don’t have enough spoons—a term popularly used in the disabled community to describe a lack of energy to accomplish simple everyday tasks that a non-disabled person takes for granted. In this, however, we are not altogether different than the rest of you. The experience of the “terrible, horrible, no-good, very bad day” is universal, but living with a disability, or at least with certain disabilities, isn’t necessarily an interminable struggle. It involves developing coping mechanisms that allow us to live normal lives, and normal is a term relative to our own experiences. Harnessing my guide dog or picking up my white cane with one hand and my keys with the other before I walk out the door is just as normal to me as getting into your car and driving to work is to you.

The term normal, when invoked in conversations about disability, sets up a dangerous binary; it associates an implicitly negative connotation with anything that’s somehow different. Someone who navigates the world with a guide dog, or a white cane, or a wheelchair, or a scooter might appear different to you, but this is their normal. When you stare, when you point, when you walk up to us and ask impertinent questions that you’d never consider appropriate to ask a non-disabled person (questions ranging from state of health to whether someone lives alone), you place us on exhibition. On a side-note, I have frequently been asked whether I live alone, always by men, never by women, and always when I’m unaccompanied in public, which raises questions about the intersection between sexism and ableism; why do non-disabled men think it appropriate to approach a woman with a disability in this way?

I raise these issues not to discourage questions about disability; on the contrary, questioning is essential to productive dialogue. As a teacher, I have the job of guiding students through the process of asking questions to gain a deeper understanding of the world they live in. Most of the time, questions come from a place of genuine curiosity and a desire to seek understanding. Having said that, we must also recognize that asking questions about one’s disability potentially crosses boundaries of privacy, depending on the nature of the question. Some disabilities, like mine, are genetic; others are the result of illness or injury. Whatever the cause, learning to cope with a disability is sometimes traumatic and always challenging, and we reserve the right to decide when, how, and with whom to share those narratives of struggle and triumph.

When encountering a person with a disability for the first time, determining what to say or fearing that you’ll inadvertently give offense can create a lot of unnecessary tension. The lists of dos and don’ts can very depending on the person and the disability, but from my experience, here are some of the more common pitfalls to avoid:

1. Don’t tell me that if I pray harder, someday, god will heal me; there’s nothing to heal because I’m not broken, and frankly, he could have saved himself the trouble by giving me a fully functioning pair of eyes in the first place. He had his reasons. I work with what he gave me and don’t ask questions. On another note, as a practicing Catholic, I find this comment particularly irritating because it implies that my disability is somehow the result of my own lack of faith–or worse, my sinfulness.
2. Don’t ask me if I want to feel your face; I really don’t, and I never will—ever, ever, ever, ever. I can’t reiterate this enough, and the world just doesn’t contain enough Purell for me to wander around touching random strangers’ faces.
3. Don’t assume that if I’m with someone that the person is my “keeper”—a word I’ve actually (and unfortunately) heard used before, as if people with disabilities are zoo exhibits. There are, of course, individuals who work as aids and personal care attendants, and this is just the reality of living with a disability—that we sometimes require varying degrees of assistance. This does not, however, mean that people with disabilities cannot form fully functional relationships; we have families, friends, and romantic partners who choose to spend time with us because they find pleasure in our company, not because we require them too. Similarly, personal care attendants, ASL interpreters, readers, drivers, mobility instructors, etc. often develop deep bonds of friendship and mutual respect with their clients—the natural result of the access they’re granted to the daily rhythms and routines of another person’s life. In short, people with disabilities can and do develop strong interpersonal relationships not entirely founded on our dependence on others.
4. Don’t speak to the person with me instead of addressing me directly. This applies particularly in food service and retail. I might occasionally forget the name of an outlandish dish someone’s just read me on the menu, but please do me the courtesy of allowing me to speak for myself. I once had a sale’s clerk in a department store ask my mother questions about my dress size, because apparently my inability to see my reflection in a mirror also meant that I couldn’t judge the shape and size of my own body, even though I’m the one occupying said body. A little sensitivity training over here, please and thank you?
5. Don’t ask me if I can “see any better today,” which sadly has also occurred because some people missed the memo that a permanent disability is, well, permanent. Unless gene therapy makes more impressive strides than it already has, my answer to this question is never going to change.

Believe it or not, the salient takeaway here is both glaringly obvious and profoundly important. People with disabilities are just that–people. We have hearts, minds, hopes, dreams, jobs, families, friends, and talents to share with the world. Extend to us the same respect you’d extend toward any human being. More simply put, to borrow a quote from Henry James, “Three things in human life are important. The first is to be kind, the second is to be kind, and the third is to be kind.”